Go to page

Moderator

Several months ago I decided to write to the Mayo Clinic because of their abysmal website and treatment for ME/CFS. It took me a few months to get the letter done, and then more work to try to find out who/where to send it. I ended up sending 6 copies (it's a long story) on 6/25.

I am stunned - I really did not expect to hear from anyone but 2 days ago I got an e-mail response from a Dr. Fischer, which basically acknowledged my letter and not much else, but at least it was a response.

But - a few minutes ago - I got an e-mail from a Senior Editor of the Mayo Clinic in Rochester Minnesota, who thanked me for my letter and said the timing was fortuitous (!), they are reviewing their "article" - I think they meant website. I am blown away. Anyways, here's the e-mail from the senior editor and I'll do 2 more posts below this, with my original letter to the Mayo Clinic, as well as another doctor's response of 2 days ago, and my response to him this morning.

Maybe more input from the community here to Mayo? You all know so much!

Here's what I got today:

Ms. Barker,
Your letter re: Myalgic Encephalopathy/Chronic Fatigue Syndrome was forwarded to me as I am the senior editor responsible for this topic area. We are in the process of reviewing and updating the article, so the timing of your letter is fortuitous. I will ask the editor assigned to it to review your comments and the resources you highlight, and discuss them with the physician reviewer. Thank you for taking the time to contact us.
Sincerely,
________________________
Senior Editor
MayoClinic.org
Phone:
Email:
___________________________Mayo Clinic
200 First Street SW
Rochester MN 55905

ETA: edited to remove personal information- am happy to pass on informed comments to Mayo by you all

Moderator

This letter is rather lengthy and contains several hyperlinks; if you would care to receive it in e-mail format which would be much simpler to navigate, please let me know and I’ll be happy to do so. My e-mail address is _______

I am deeply concerned by your clinic’s apparent ignorance of the Institute of Medicine of the National Academies’ report dated February 2015, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, which, among other things, provides guidelines concerning the nature, diagnosis and treatment of ME/CFS which you can find here:

Two of your recommended treatments as shown on your website for persons with ME/CFS (graded exercise therapy [GET] and counseling [CBT]) are either inappropriate and actually harmful (GET) or just useless (CBT) as explained below. Your website is also misleading as to the intended function of pacing, and the true nature of ME/CFS.
MAYO CLINIC WEBSITE

"Although CFS/ME and SEID share the same major symptom of chronic fatigue, there is variation between the definitions of these disorders."

This one sentence from your website has two glaring inaccuracies. First, the hallmark of ME/CFS is not chronic fatigue (despite the unfortunate name); rather, it is post-exertional malaise, a pathological response to exertion not found in any other illness.

Second, SEID and ME/CFS are one and the same illness and your reference to "these disorders" obscures this fact. SEID is the new name for ME/CFS proposed in the IOM report referenced above. New diagnostic criteria were proposed, along with the new name, to more accurately characterize this illness. This raises the question of why the Mayo Clinic wants to make a distinction between SEID and ME/CFS.

You tellingly fail to mention that the new name of Systemic Exertion Intolerance Disease was necessitated by the extremely inaccurate name of Chronic Disease Syndrome, which has led to trivialization of this devastating illness and consequent almost complete absence of research and funding for the last 35 years, leaving patients to languish for decades.

I’m not splitting hairs here. The IOM report states:

"This name [SEID] captures a central characteristic of the disease - the fact that exertion of any sort (physical, cognitive or emotional) - can adversely affect patients in multiple organ systems."

This is what the IOM report says as to the diagnosis of SEID/ME/CFS (note that the IOM conflates the two names:

"Diagnostic Criteria for ME/CFS (SEID)

"Diagnosis requires that the patient have the following three symptoms:

(1) A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and

(2) Post-exertional malaise,* and

(3) Unrefreshing sleep*

At least one of the two following manifestations is also required:

Cognitive impairment* or

Orthostatic intolerance

The IOM report further states:

"This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort.

" . . . .

"Impaired day-to-day function, post-exertional malaise (the worsening of symptoms after physical, cognitive, or emotional activity), and unrefreshing sleep are almost universally present in ME/ CFS patients. Therefore, the committee considers these to be the three core symptoms of the disease."
This may seem like quibbling over a definition, but the dangers of using the incorrect diagnostic criteria cannot be overstated. If doctors (including the Mayo Clinic) persist in the idea that ME/CFS is simply a matter of severe fatigue, and are unaware that exertion exacerbates symptoms for persons with ME/CFS, often severely, then they will prescribe GET (graded exercise therapy) as recommended on your website - the single most damaging therapy that can be used with ME/CFS patients.

This is why getting the definition right is crucial. If you have someone who is simply tired because they are deconditioned or depressed, then exertion will not make them worse and they will benefit from GET. But the central problem of people with ME/CFS is not depression or deconditioning due to lack of exercise; they are unable to exercise because of a failure of energy metabolism, and requiring a person to exercise despite this failure can cause severe harm. This is the major reason why the IOM recommends changing the name from Chronic Fatigue Syndrome to Systemic Exertion Intolerance Disease - it’s not just a cosmetic change.

So that you might understand this inability to tolerate exertion better, I urge you to familiarize yourselves with the results of the 2-day CPET (Cardiopulmonary Exercise Testing) and persons with ME/CFS:

The second day CPET results for persons with ME/CFS are devastating and not seen in any other illness and are not the result of deconditioing. They are the reason for the term "post-exertional malaise" (PEM) which is generally delayed onset and most often hits 24 or more hours post-exertion. Some patients were on the verge of heart failure on the second day of testing, unlike the first. No other illness or condition has this feature, including deconditioning.
MAYO WEBSITE:

"The symptom of chronic fatigue also may arise from more than one underlying condition . . . ."

This is misleading and can lead to inappropriate and harmful treatment. Again, the core problem as identified by the name SEID is the pathological response to exertion experienced by someone with ME/CFS. If someone is tired (due to any sort of condition) but they do not experience post-exertional malaise (PEM) as demonstrated by the 2-day CPET test referenced above, then by definition they do not have ME/CFS. If they have different underlying conditions and do not have PEM, they do not have ME/CFS. It is as though you are conflating all fatiguing illnesses (e.g., hypothyroidism and anemia) into a meaningless hash.
MAYO WEBSITE:

"The immune systems of people who have chronic fatigue syndrome appear to be impaired slightly, but it's unclear if this impairment is enough to actually cause the disorder."

And this is what the IOM states about the immune systems of persons with ME/CFS:

"Sufficient evidence supports the finding of immune dysfunction in ME/CFS (SEID). Specifically, the committee’s literature search yielded data demonstrating poor NK cell cytotoxicity (NK cell function, not number) that correlates with illness severity in ME/CFS (SEID) patients and could serve as a biomarker for the severity of the disease, although it is not specific to ME/CFS (SEID)."

Many do consider low NK cell function to be a biomarker for ME/CFS because it is considered to be universally present in ME/CFS patients. It would be much more accurate and informative for your website to provide this information instead of talking about slight impairment.
MAYO WEBSITE

"Chronic fatigue accompanies many medical conditions and may not be an isolated symptom. In such cases, the better term may be "chronic multifactorial fatigue."

What does this have to do with ME/CFS? Are you trying to rename ME/CFS? Yes, if one has "chronic fatigue" but does not have ME/CFS, then yes of course they could have "multifactorial fatigue" (whatever that means!) But this section of your website is about ME/CFS, not about any condition which has "chronic fatigue". Unfortunately, you seem to be saying that people with ME/CFS simply have "chronic fatigue". And this is the heart of the matter.

Lastly, but certainly not least, is your section labeled "Therapy". Nowhere in the IOM guidelines do they talk about any of your "therapies". Again, your website is rife with inaccuracy:
MAYO WEBSITE

Nowhere is this suggested in the IOM guidelines. It’s actually potentially quite dangerous for persons with ME/CFS for the reasons outlined above. However, this IS one of the main two treatments recommended by the fatally flawed study published in March 5, 2011 in the Lancet: Comparison of adaptive pacing therapy ("PACE"): cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome. (http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract)

One of the many defects in the PACE study was to actually lower the recovery threshold from entry levels - in other words, a person could be worse off after the trial than at the start, and still be considered "recovered". This study has been thoroughly debunked and demands for retraction have been made by leading ME/CFS physicians and researchers worldwide.

"Your strength and endurance will improve as you gradually increase the intensity of your exercise over time."
Again, not true for persons with ME/CFS; however, it IS true for persons who are simply deconditioned and do not have ME/CFS.
MAYO CLINIC WEBSITE:

"People who have a better chance of treatment success tend to have less impairment, focus less on symptoms, comply with counseling programs and pace themselves to avoid overexertion and underexertion."
Again, the IOM report says nothing about focusing less on symptoms and complying with counseling programs as a means to recovery. And pacing has nothing to do with underexertion - the sole goal of pacing is to avoid damage and severe exacerbation of symptoms due to overexertion. No one with ME/CFS has gotten worse from resting, but many have declined, often severely, due to overexertion. The subtext of your statement is that people with ME/CFS are simply deconditioned. You guys just don’t get it, to the severe detriment of patients worldwide, owing to the prestige of the Mayo Clinic.

I urge you to watch former Harvard student Jennifer Brea’s TED talk concerning her experience with ME/CFS and the harm she suffered when she pushed herself physically because of her doctor’s ignorance, in line with your recommendations:

Jennifer Brea ignored all her symptoms, followed her doctor’s recommendations and forced herself to walk home after an appointment, taking his word that perhaps her problem was all in her head. She has not returned to her prior level of functioning since that walk home.

I think it’s almost impossible for a normal healthy person to imagine functioning where exertion makes you worse, but this is the daily reality for person with ME/CFS. The unfortunate name given to this devastating illness has greatly contributed to the ignorance and disbelief prevalent among society and the medical profession as to its true nature.

And pacing per se is not a treatment - it’s a means of coping, much as using crutches enables someone with a broken leg to ambulate; crutches help prevent further damage to a broken leg, but by themselves do not cause healing.

And counseling, while it may help a person come to terms with ME/CFS (inasmuch as it is possible to come to terms with having your life come to halt and to be treated as though it is all in your head) again is not a treatment, no more than counseling someone with a broken leg will help their leg to heal.
MAYO CLINIC WEBSITE

Astoundingly, you state under "alternative" treatments that:

"It's difficult to determine whether these therapies actually work, partly because the symptoms of chronic fatigue syndrome often are linked to mood and can vary from day to day."

Where do you get your information? Post-exertional malaise is not caused by someone’s mood, although PEM can definitely affect your mood. If you feel like you’ve been hit by a truck and run a marathon all at the same time, it will be difficult to maintain a positive attitude. Well, that’s PEM. Dr. Robert Naviaux of University of California at San Diego conducted a study which showed ME/CFS to be a hypometabolic state (see below).

Fluge and Mella of Norway are conducting studies showing promising results for some people with ME/CFS with the use of Rituximab, a chemotherapy drug, indicating a possible autoimmune component to ME/CFS. They happened upon this line of inquiry when a lymphoma patient who also had ME/CFS, had their ME/CFS symptoms improve when given Rituximab for lymphoma. (See below)

The level of misinformation as well lack of any meaningful information on your website is frightening. I urge you to educate yourselves and learn about the latest developments in ME/CFS research, most notably the following:

(1) The End ME/CFS Project, at the Open Medicine Foundation in Stanford, California, being led by Ron Davis, renowned geneticist who is leading a team with 3 Nobel Laureates and six National Academy of the Sciences members: http://www.openmedicinefoundation.org/the-end-mecfs-project/
Dr. Davis’ son is extremely ill with ME/CFS and completely bedridden.

There are treatments which can help ameliorate comorbid conditions such as orthostatic intolerance and postural orthostatic tachycardia syndrome. Latest research indicates abnormalities with glucose metabolism and consequent amino acid deficiencies as the body uses amino acids to produce energy when the normal mechanism fails. Supplementation with various amino acids (such as branched chain amino acids) thus can help with energy metabolism. Sleep difficulties can be managed with various supplements (including niacin and l-theanine) which increase GABA or sensitive GABA receptors. D-ribose helps produce ATP and can help with functioning. And the list goes on.

This is like plugging holes in a dike - it won’t resolve the underlying condition but can help with symptoms until the central cause and a solution are found. Unfortunately, doctors who are knowledgeable about ME/CFS are extremely rare and patients for the most part have been left on their own to find solutions inasmuch as possible, while avoiding doctors and treatments which cause harm. (I speak from experience here, having suffered from ME/CFS for nineteen years; prior to getting ill, I worked full-time, raised a family and was physically very active; my life changed overnight.)

I would greatly appreciate your consideration of these matters and look forward to hearing from you.

Moderator

And here's a doctor's response of 2 days ago, as well as my response to him of today:

Ms. Barker,

I received a letter addressed “To Mayo Clinic” but with my name on the envelope in which you offered a detailed explanation of your disagreements with material about chronic fatigue on the Mayo Clinic website.

However, I don’t recognize your name (despite having grown up in southern California) and don’t know if we’ve met. I do general pediatric work here at Mayo and have the privilege of caring for many adolescents with long-term tiredness. Over the past couple decades, we’ve learned a lot about fatigue, especially as related to postural orthostatic tachycardia syndrome.

While I can’t speak for the entire Clinic or even for those who write our website entries, I do thank you for your letter and am sorry to hear about your own health struggles. One of the things we strive for at Mayo is to provided individualized care, tailored to the specific situation of each patient. I suspect that you would agree with that since you disagree with some of the “lumping” of multiple sorts of tired patients together.

And, it seems that you like staying current with new medical literature. The attached article from the UK just came out and touches on some of the issues you raised.

Thanks for stimulating my thoughts.

My response to him of today:

Dear _________________

I appreciate you taking the time to respond to my letter. I probably should clarify why you were one of the six recipients of my letter. When I did a search on the Mayo website for practitioners who treat “chronic fatigue syndrome”, the only hit I got was for a psychologist, Leslie Sim. It was mind-boggling to see that one of the most prestigious institutions in the world has only a psychologist to offer for treatment of one of the most serious illnesses in the world. Millions of lives worldwide have been destroyed by ME/CFS; (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) so the ignorance of the Mayo Clinic is baffling, to put it mildly.

In a desperate effort to find a physician at the Mayo Clinic who might be involved in the treatment of ME/CFS, I did a search on your website for “chronic fatigue”, since the Mayo Clinic only offers a psychologist for the treatment of “chronic fatigue syndrome”, and your name popped up in the “chronic fatigue” search, along with a few others.

So I sent my letter to several of you in a shotgun approach, hoping to get a hit of some sort.

I’ve taken the liberty of re-sending my original letter to you separately by e-mail, because of the numerous hyperlinks in that letter which contain crucial information. If you look at them, you will see that Esther Crawley, one of the authors of the paper which you kindly sent to me, knows nothing about ME/CFS. Again, if you look at the links in my first letter, you will see that the UK PACE trial published in the Lancet in February 2011, which purportedly showed the efficacy of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) for the treatment of ME/CFS, has been thoroughly discredited, and that those treatments are not only useless but that GET is actually harmful to ME/CFS patients. But Ms. Crawley and the Mayo Clinic continue to promote these “treatments”. I’m not going to repeat it all here as it’s set forth in great detail in my letter. For more information on the discredited PACE trial and Ms. Crawley, see these Virology Blog articles by David Tuller, academic coordinator of master’s degree program at UC Berkeley:http://www.virology.ws/mecfs/http://www.virology.ws/2015/10/21/trial-by-error-i/http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ (Esther Crawley)

Ms. Crawley has willfully ignored all scientific evidence concerning ME/CFS. Several links to current ME/CFS research are provided in my original letter.

The paper you sent me says that CBT is the most effective treatment for ME/CFS. If you would read the information I provided, you’ll see this is just not the case. CBT is just as effective for ME/CFS as it is for cancer or AIDS. The paper also wrongly urges the use of GET for ME/CFS. GET is harmful to ME/CFS patients. The links and information I have provided explain why this is so.

But these useless and harmful treatments are exactly what the Mayo Clinic is perpetuating by its gross ignorance. I explain in more detail in my original letter why these are useless and harmful. Very briefly, ME/CFS is not the result of being deconditioned or depressed, for which CBT and GET would be effective. Rather, ME/CFS is an extremely serious metabolic disorder which results in a pathological response to exertion, whether mental or physical. This pathological response to exertion is unique to ME/CFS.

By the way, orthostatic intolerance is very often a comorbid condition with ME/CFS. But treating OI, while alleviating some symptoms, does not cure ME/CFS. The Institute of Medicine report I linked in my original letter has this to say about orthostatic intolerance:

“Orthostatic intolerance is a general term that implies worsening of symptoms upon assuming and maintaining upright posture. Symptoms are improved, although not necessarily abolished, by lying back down or elevating the feet. Sufficient evidence indicates a high prevalence of orthostatic intolerance conditions in ME/CFS (SEID) as measured by objective heart rate and blood pressure abnormalities and physical findings during standing, bedside orthostatic vital signs, head-up tilt testing, or by patient-reported exacerbation of orthostatic symptoms with standing in day-to-day life. These findings indicate that orthostatic intolerance is a common and clinically important finding in ME/CFS (SEID).”

I urge you to look at the links provided in my first letter. It took me weeks to write and I don’t have the energy to restate it here. It actually might be helpful for your treatment of some of your adolescent patients.

I am probably involved in a futile quest, trying to educate the Mayo Clinic about ME/CFS. I could not find a proper person to address my concerns to, though I did try, but I think it’s just too big of an institution. How would I get the proper person’s attention?

If you know of someone more appropriate who could properly address this matter, I would be very grateful and will address my concerns to them. As you may or may not know, it is estimated that 2 million people in the United States have ME/CFS. It’s huge. And because of politics and general inanity, it’s invisible. Many are homebound. You literally don’t see us. We’ve disappeared from the world.

I urge you to read the links I provided in my original to the Institute of Medicine, and the groundbreaking research being done at Stanford by Ron Davis of the Human Genome Project and several Nobel laureates and members of the National Academy of Sciences, and the metabolomics research being done by Robert Naviaux at UC San Diego. Even the NIH is starting to awaken from its decades long slumber and finally devoting some research money to this illness. Doctors who treat both AIDS and ME/CFS say they would rather have AIDS.

Again, I really do appreciate your response and any help you can provide.

Patient in training

Moderator

@Mary This is a fantastic accomplishment on your part especially for someone so sick. So well written and clearly addresses all the issues raised by the website and the return letter. Thank you so much!!

Senior Member

I can only say again that the IOM report was under appreciated. Yes, it did propose an unsatisfactory and unvalidated case definition, but it got so many things right, it was really a huge step forward. It's hard to win against the BPS school until we get support from prestigious institutions such as the IOM.

If the IOM report is updated (they did say that their plans included a revision of the case definition within at most 5 years) please let's strongly support it. The case definition is going to be flawed anyway until the biology and the subgroups are clarified, and I would rather have SEID than Fukuda in the meantime. A definition like the CCC excludes too many people that also need help.